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Sunday, December 7, 2014

A lot of the time, when I ask parents and teachers to
consider a neurodiversity perspective of autism, or to look for what their
children’s strengths may be and not only their deficits, people will retort,
“My child doesn’t have any savant skills!”

And so I wanted to address the relationships between what we
commonly think of as “savant skills,” and communication, expression, and the
deficit model of autism.

Autism is commonly conceived of only as a set of serious
deficits, except for when it confers spectacular, miraculous-seeming, but
isolated savant abilities or splinter skills.

This is a problem.

*

I was kind of already thinking about these things when I ran
across this post, about splinter skills as simply
very specialized expressions of things that are otherwise just called talents,
and this paper, which describes savant skills as specific
perceptual strengths for which the time and tools necessary for reinforcement
are available. (Note: the paper is in very dense, abstract, and academic language. It's a rewarding article to read, but it is not written in accessible language.)

I’ve always presumed myself not to have a savant skill.I certainly don’t have any of the
stereotypical, conspicuous ones like card-counting, calendar calculation, or
photorealistic drawing. But I’m
not totally sure anymore that’s true.Or at least, what my actual core strength is, is fairly ultra-specific
and manifests in a relatively narrow band of tasks.

And I think it’s something related to perception and
filtering of information about time.(How’s that for obscure and specific?)

This thing about timing is something I feel like I’ve always
had as a primary perceptual bias. It’s an entirely non-verbal perception, and
yet it can have expression in verbal contexts.

Whether or not I have any way to express it, on the other
hand—to make it apparent as a strength at all—is incredibly context-specific.That’s happened twice—in scholar
bowl—where in my first student vs. faculty rounds in middle school, I was so
fast at pulling answers about subjects I’d never studied out of thin air and
hitting a buzzer that it had my teachers scrambling to discover how I was
cheating.And in stage management—what
I now do for a living.

People are still surprised to hear that calling a show—that
is, the act of reciting from a script all the light, sound, and entrance cues
in a show so that they happen exactly when they should—is my favorite part, and
the easiest part to me.I was
confused the first time I was asked in an interview, with some skepticism,
whether I like calling shows.

I love it.Nothing else feels so mentally close to
flight.

And I was just good at those things, the first time.I got even better with practice, but
they were things that just intuitively clicked the first time I did them.But I was fairly old before I had any
way to demonstrate this as a pattern of skill, and even older before I had the
language or pattern of experience to recognize and identify it for what it is.

The counterintuitive part is that even though it’s a
strength, even though it’s an enhanced perception compared to what most people experience…it
can also be disabling.It’s intimately
involved somehow with why speech and initialization of movement are
difficult.It’s related to why participating
in group conversation is hard, because other people are using an entirely
different set of cues to direct and understand the flow of conversation.

It’s a major source of anxiety, because this thing that my
whole sense of the world is patterned on, is undermined and disrupted by most
other people most of the time.It’s
part of what makes transitions so hard to navigate for the same reason.

It’s the very same
trait that can be a strength or a disability depending on the context in which
it occurs, and sometimes even both at once.It’s the same trait that makes speech and gross motor
planning hard, as makes me able to run a complicated show practically as easily
as breathing, depending on my environment, the expectations of people around
me, and the tools I have access to.

People who have a recognized savant ability or “splinter”
skill are only the ones who have a readily available medium for it.

What’s most alarming to me is how dependent on access to
technology and educational resources my chances of even getting to identify and
make use of this have been.

If I hadn’t had the language capability I do, if I hadn’t
been considered a gifted student, if my chances of going to college were undermined
instead of supported, if I hadn’t had access to theatrical training—all of
which could so easily have happened if I’d remained non-speaking.Or if I’d even been diagnosed correctly.I would likely have been denied access
to the very resources that are most necessary to expression of my most central
abilities, based only on prejudices about what my inabilities meant.(Which weren’t not there anyway, they
were just not acknowledged or presumed to be willful on my part.)

There is no reason why acknowledging disabilities, deficits,
and need for supports should mean refusing to recognize strengths, or why
recognizing strengths should mean refusing to cope with deficits.Humans don’t have only intrinsic strengths
or savant skills or disabilities.Not only are none of those things mutually exclusive…they can actually
be intimately related.

It positively frightens me to think about how many kids
could be in a situation in which their strengths are denied because they don’t
fit a limited stereotype of what “savant” abilities look like.Where their families and teachers have
been taught to see only grave deficits as consequences of autism. Who haven’t been given any way to know or
communicate what tools they need or what kind of environment would best allow
them access to their abilities, which may not resemble what most people think
abilities look like at all.

How many are being written off as being without abilities,
even without awareness, because they don’t have the medium they need for
expression?

When I ask “What are this kid’s strengths?” the answer may
require looking for something that is also at the root of their disabilities.

I want to be totally clear:I’m not saying that all autistic kids have some hidden,
magical savant skill, but that people are in danger of having their abilities
and competencies ignored when they don’t look like what people think savant
skills look like, and believe that a limited repertoire of savant skills are
the only true abilities that an autistic person could have.

[Image is of a Clear-Com headset sitting on top of a stage manager's calling script, with lots of cues and timing notes written in.]

Wednesday, October 29, 2014

Let me preface this by saying that I don't have a formal ASD diagnosis (just various mental illness labels), and am unsure whether or not I'd qualify for one. What I can say is that, throughout my life, I have had various small but very significant gaps in what is considered "normal" functioning for someone of my age group. Many of them are common among autistic people. Some of them were easily overcome or managed, others not so much.

I want to talk here about one that caused me quite a bit of grief before I learned how to cope with it, but which was actually quite easily accommodated once I understood it.

I'll begin by noting that I struggle with eating sometimes. My appetite varies wildly according to numerous factors from stress level to time of the month, and I can easily forget to eat altogether for the better part of a day, or more. I've been known to faint before realizing I was hungry.

I was lucky to grow up with a mother who put food in front of me three times a day, so I ate quite regularly as a child. The downside was that, when I became a teenager and began spending more time out of the house, I didn't yet have the ability to notice for myself when I needed to eat or take appropriate steps to acquire food before I collapsed.

And here we run into the real problem, which is that sometimes, when I haven't eaten recently enough, and especially in the morning before my first meal, I cannot function. I don't mean I am grumpy or groggy or poor at making decisions. I mean that, intellectually and emotionally, I revert to essentially the same level as a tired toddler. I can't make the simplest choices. I burst into tears at minor frustrations and then can't stop crying. I'm very nearly helpless, particularly if anyone asks me to do or think about anything that I can't do on autopilot.

My mother and I really discovered this shortcoming on my college tour trip. We had stayed overnight at a hostel, and in the morning we dressed and set out to find a place to eat breakfast. My mother asked me what I wanted. I wasn't sure. She questioned further, trying to get a better idea or a decision. I became mildly hysterical. I have a vague memory of standing on a sidewalk in tears, wailing "I don't know! I don't know!" over and over while my mother looked on in shock and confusion at her college-bound, nearly-adult daughter going entirely to pieces over the question "what do you want for breakfast?" I was completely out of control in what I now recognize as a meltdown.

Somehow, Mom got me calmed down and into a cafe, and I managed to order something. Within minutes of starting to eat, it felt like I returned to awareness after having been only dimly conscious of myself. I still felt shaky, but I was suddenly rational again, able to control my emotions, to think, to focus. The feeling of panic and overwhelm was gone.

"I think," I said, eventually, "it may be best if, in the future, you don't ask me any questions until I've had something to eat. You can choose for me next time, ok?"

"That sounds like a very good idea," said my mother, who was a bit emotionally exhausted herself by the ordeal.

It wasn't quite as easy as that. She's forgotten this rule sometimes, and I'm usually in no condition to remind her of it when that happens. Sometimes she doesn't know I haven't eaten recently until I melt down over something minor and she thinks to ask. Sometimes there are questions she needs an answer to before breakfast. Often, I'm fine up to a point-- I can answer certain questions better than others, or I wake up energized and am ok for a while before the need to eat sets in. Then it takes everyone, myself included, by total surprise when I suddenly break down.

I've become more adept at managing this over the years. I make breakfast plans the night before. I warn lovers and traveling companions about the hazards of questioning me before I've eaten or at least drunk something with calories in it. If we plan to dine out for breakfast (not a common occurrence), I eat a granola bar before leaving home.

Over the years, my primary tactic has become a lot simpler. Now there is always some kind of snack food on my bedside table. Usually, I admit, something with a fair bit of sugar in it-- a single-serve packet of cookies, for example, or a candy bar-- something I'm not likely to turn down even if I don't feel the least bit hungry. So I get some sugar into my bloodstream before I even get out of bed, and I find it helps me be more alert and functional in general (I've been tested for hypoglycemia, by the way, and I don't have it-- or any number of other metabolic abnormalities that have been suggested. Ultimately, though, in this case it hasn't been a diagnosis that made the difference, just finding a coping strategy). I'm sure plenty of people, including my mother, would disagree with me from a nutritional standpoint, but it works for me. And some days, it truly makes a world of difference.

Small things matter. Individualized coping strategies matter. Identifying needs and triggers can mean the difference between a horrible day for everyone and the complete opposite. It does no good to blame someone for going to pieces when they can't handle something, and it doesn't really matter why they can't handle it, either-- you just have to accept that they can't and work from there. Abilities can vary a lot with context. This story is the very simplified version-- lots of ups, downs, and variations actually occurred before this all ran smoothly. And my coping strategies still fail me at times, particularly if something interrupts my regular routine. But such failures happen less often now than they used to. Years of practice helped. Hang in there. Keep trying things until you find what works for you.

Sunday, August 10, 2014

I have had a lot of reaction in the past couple of days to
that Times Magazine article concerning “The Kids Who Beat Autism.”Here’s about all I have left.

The parents, the teachers, the therapists and researchers
without a clue who are celebrating “recovery” because in their heads they’re
defining autism as a fixed set of permanent inabilities—

-Are not the people doing the work of passing, and are not
going to be the ones to find out first-hand just how long it isn’t actually
sustainable.

-Are not the people who get told we’re too articulate to be
autistic but have to ration our hours of speech per day.

-Are not the developmentally disabled women who suffer a
sexual abuse rate of over 90%, no thanks to the compliance training that
teaches that allowing others to control our bodies is desirable behavior.

-Are not the kids pulling themselves through school without
disability accommodations.

-Are not the kids getting their supports pulled out from
under them when they lose a diagnosis.

-Are not the kids getting chided and belittled because their
challenges and oddity are now seen as choices of defiance or misbehavior.

-Are not the people being lied to about who they are.

-Are not the people who are going to wake up one day 20
years from now with no idea who they are or how they got there.

-Are not the people who will spend a year and a half having
a meltdown with no idea of what’s happening or why.

-Are not the kids being taught that accepting yourself as
you really are and as you really work, would be the worst possible thing.

-Or that the “best outcome” possible for you is to spend the
rest of your life pretending to be something you’re not.

-Are not the people who are going to have to re-learn where
they belong in space and time and how to live there.

-They will not be the people giving these kids a community and
a support system years from now.They will not be the ones who know what to do when they start having
breakdowns and burnouts.

They will not be the ones supporting their kids in learning
self-acceptance when all their passing skills fail because they are actually
incompatible with functioning in the long term.

We will.

They will not be the people there to pick up the pieces.

We will.

There is, indeed, hope for the kids featured in this
article, for joy and authenticity.This article could’ve come with a spoiler alert; we know the end of this
story.We know it many times over.

It’s just not that these kids live out their lives as
non-autistic people.

Monday, July 28, 2014

We Are Like Your Child is pleased to host a guest post from Heather E. Johnson today! Heather blogs at And here are my words...

*

I am autistic

okay, that may be a “duH” thing to write as a
headline but it seems many of my Facebook friends fail to remember that. I
don’t know how. I exhibit many of the symptoms. It seems to be that it is
because I type well.

Well, I don’t recall that being listed as a thingwhen the changes were being made.

Hereis the DSM-V diagnostic criteria on
severity and levels. I know I should be shot for using an Autism Speaks source
but they were the top search engine return that fit my need!

Okay, so based on this new criteria, here is how I
was recently re-labeled. (recently as in days ago). I use excerpts from the
cited website above and from my doctor’s notes on his findings. (I always get a
page by page copy of my medical records to keep on hand. They have come in
handy, in particular for cases such as this evaluation.

“Persistent deficits in social communication and
social interaction across multiple contexts, as manifested by the following,
currently or by history:

Deficits in social-emotional reciprocity, ranging,
for example, from abnormal social approach and failure of normal back-and-forth
conversation; to reduced sharing of interests, emotions, or affect; to failure
to initiate or respond to social interactions.”

From my doctor’s notes:” Ms. Johnson shows deficits in
social-emotional reciprocity. She fails in social approach (based on documented
medical records from birth to present day) and failure of back and forth
conversation. She often stares in a state that makes her look like she’s
daydreaming while someone is talking with her, including this physician during
our interviews. She reports that she “zones out” when trying to converse with
others after her interest in what that person has to say wanes. Ms. Johnson
does seem to have improved in recent years in her desire to initiate and
respond to social interactions but has not been able to follow through except
in online contexts.”

”Deficits in nonverbal communicative
behaviors used for social interaction, ranging, for example, from poorly
integrated verbal and nonverbal communication; to abnormalities in eye contact
and body language or deficits in understanding and use of gestures; to a total
lack of facial expressions and nonverbal communication.”

From my doctor’s notes:“Ms. Johnson has deficits noted in her
medical records which were provided to this physician and covered from birth to
present day. She does not consistently and successfully use nonverbal
communicative behaviors in social interaction. As observed by this physician,
she presents with a total lack of facial expressions at times and does not seem
to understand nonverbal communications used in many contexts. She probably
succeeds more in her online social interactions because nonverbal communication
is not used in that form. She makes minimal eye contact with others, as
observed by this physician, and often uses a coping skill of looking at a
person’s nose rather than their eyes.”

“Deficits in developing, maintaining, and
understanding relationships, ranging, for example, from difficulties adjusting
behavior to suit various social contexts; to difficulties in sharing
imaginative play or in making friends; to absence of interest in peers.”

From my doctor’s notes:“Ms. Johnson is an adult at present
and some of the observations come from her previous medical records and some
from this physician’s personal observation. Ms. Johnson states she can only
recall two incidents where she initiated “making friends” with another person.
A first grade teacher provided a report to a military physician in 1984 that
Ms. Johnson, as a seven year old, “does not seem to play well with others and
prefers to play alone or alongside her classmates. This is not developmentally
where she should be.” Ms. Johnson stated that she lost contact with her sister
for 10 years and only realized she missed this sister when she came into
contact with her again online last year. Ms. Johnson further stated that she
has always felt “if my friends were out of sight, they were out of mind” and
she does not actively seek to stay engage in her relationships. She waits for
her friends to call her or message her on Facebook, a social media website. The
only exception seems to be her biological father.”

“Restricted, repetitive patterns of behavior,
interests, or activities, as manifested by at least two of the following,
currently or by history

Stereotyped or repetitive motor movements, use of
objects, or speech” and

From my doctor’s notes:“Ms. Johnson does present with
repetitive motor movements also known as “stimming”. She moves her hands in a
manner that could be described as “flapping” or “trying to clap with one hand
only” while waving the arms around. Ms. Johnson does carry a co-occuring
diagnosis of Obsessive Compulsive Disorder and therefore also shows repetitive
patterns of behavior, interests and activities as a part of that condition. It
is unclear which diagnosis is the cause of that behavior at present. Nor is it
clear at present which disorder causes the inflexible adherence to routines and
ritualized patterns. For instance, she does things so that they are done an
even number of times, often repeating phrases so that a phrase is said an even
number of times. She once refused to sit in an office when it had three chairs
instead of an even number of chairs.“

"Highly restricted, fixated interests that are
abnormal in intensity or focus”

From my doctor’s notes: “Ms. Johnson has a varied
amount of interests and states that she “collects” interests to obsess about.
However, this physician has noted that her interests are abnormal in intensity
and focus both from observation and in documented history. Ms. Johnson reports
that she “cycles” through her interests. She will spend days or weeks focused
on one interest and then move to the next and so on until she is back into the
original interest. This method of cycling is part of a ritualized behavior as
she starts with the same interest and moves to the next interest in the same
pattern each time.”

“Hyper- or hyporeactivity to sensory input or
unusual interests in sensory aspects of the environment”

From my doctor’s notes: “Ms. Johnson has both
observed and documented in history of hyper and hyporeactivity to various
sensory input. She has exhibited a high pain tolerance in documented history.
There is documentation that she has failed to wear weather-appropriate clothing
when allowed to dress herself as a child. She reports that presently she often
leaves the house without a coat even during winter months. Again, with her OCD
diagnosis, it is difficult to distinguish the behaviors between autism and the
OCD. She reports that she routinely spends time sniffing the air while taking a
tour of her home, to check for smells of something burning. She often touches
the walls as well to make sure they are not hot. Ms. Johnson does exhibit an
unusual fascination with visual stimulation. She has documented history of poor
visualization skills and this may account for her fascination.”

“Severity
is based on social communication impairments and restricted, repetitive
patterns of behavior“

“Level 3Requiring very substantial support"

Severe deficits in verbal and nonverbal social
communication skills cause severe impairments in functioning, very limited
initiation of social interactions, and minimal response to social overtures
from others

Inflexibility of behavior, extreme difficulty coping
with change, or other restricted/repetitive behaviors markedly interfere with
functioning in all spheres. Great distress/difficulty changing focus or
action.”

From my doctor’s notes:“While Ms. Johnson is able to
verbalize her communication, it does appear to come at a cost to her. As
the first hour-long interview came to a close, Ms. Johnson appeared more tired
and less aware of surroundings than when first started. She was confused and
was unable to navigate her way back to the exit on her own and required
assistance in finding her way. Ms. Johnson reported on the second interview
that she found it hard to “function at all” after the first interview was
conducted and she returned home. When functioning does become difficult, she
prefers to go to her bed and retreat from the world around her. Ms. Johnson
receives daily care from up to three caretakers in a given day. It is this
physician’s belief that if Ms. Johnson did not receive such substantial support
as she does from caretakers, friends and family members, she would
ultimately be institutionalized or at the minimal, in an assisted living
facility or group home. She is unable to act on a prescribed budget and make
sure her expenses are paid in a timely fashion, she is unable to remember to
eat on her own, or to take in liquids. She is unable to leave the house on her
own much of the time, requiring an escort. Ms. Johnson has many physical,
biological, and neurological conditions that contribute to her depressed
functional abilities; however, it is this physician’s opinion, based on
observation, interviews with patient and others, documented history, documented
testing and results, that Ms. Johnson should carry the diagnosis of Autism
Spectrum Disorder, specifically, Level 3.”

So, what does this mean? Well, it means, dear
concerned parent of a child with autism, I am not “high functioning autistic”.
Not that I find it to be an insult, mind you. There’s nothing wrong with being
labeled as such, despite what some of these parents seem to think. It means I
am more like your ‘severely autistic’ child than you think. In fact, I bet your
child and I carry the same diagnosis.

I want to take this moment to also point out how
unfair you are to your child. I am now 37 years old. How old is your child?
Five? Three? And you want to compare his current functioning level to mine?? I
have had YEARS of maturing and growing and learning.. decades! Our arc of
maturity may be longer than a neurotypical person’s but that by no means should
suggest we ever STOP.

I work with my sons’ therapist all the time. When
he notices we are attempting to teach one of my son’s a skill that I have yet
to acquire, I teach myself first and then my child. Much like a parent who
doesn’t “get math” will first try to understand his or her child’s homework
assignment and then assist that child with a problem. So, I am always
improving. Always adapting. So will your child. Please, though, stop comparing
your children to the autistic adults you come across.

Please, stop accusing us of being “high
functioning’ as a way to mean that we’re not “as autistic” as your children
are. Please, stop believing that even if we are not as severely autistic as
your child is, that we do not know some of the things your child experiences or
that you cannot learn from us.

Oh, don’t get me wrong. There are some autistic
adults that are as “bad” as these parents I’m currently talking to. It’s okay
to say that parenting a child on the spectrum is HARD. Why? Because parenting a
child, period, is hard. I don’t know any different though as both my sons have
a form of autism. However, I recently adopted a 17 year old male who does not
have autism. And in the 3 weeks he has lived in our home, he has become a
member of this family, and I treat him like I do any of my sons. Just because
he’s neurotypical doesn’t mean he’s any harder to deal with than my other
children. I love them equally.:D

Seriously tho, folks. Stop it. Just stop it. Stop
assuming you know my severity level because I can type 108 wpm, on average,
sustained over a five minute timed test.

As my father pointed out yesterday… I may have
much knowledge gained from memorizing books but it doesn’t mean I can apply it
effectively. Just because I can type doesn’t mean I can talk. Just because I
can type, doesn’t mean I don’t also wear adults diapers (because I do). Just
because I can type, doesn’t mean I’m able to, on my own, pay my bills on the
day they due (not because of lack of money but because of lack of thought).
Just because I can type, doesn’t mean I can get organized and clean my house on
my own. Just because I can type, doesn’t mean I don’t have executive function
issues. Just because I can type, doesn’t mean that my autism is any less
pervasive than your child’s autism. Just because I can type, doesn’t mean I
don’t have challenges that come with autism. I have overcome many of them and
some I overcome daily in order to interact with you. Why? Because I do care
about your children. I care about my own children. I want their world to be a
more accepting and less judgmental place when they grow up and enter it.

Wednesday, May 28, 2014

So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It'll all be ok. But you have some work to do.

The first thing
you need to do isn't find therapists. It isn't commiserate with other
parents. It isn't become an AAC expert (though all of these things have
their place!). It's something not in the autism introduction packet: you
need to connect on a human level with adults like your child. You need
to go make some Autistic friends.

I don't mean a
mentoring relationship, though those are extremely important and I am a
big fan of mentoring (and mentoring your child & being friends with
you are not mutually exclusive). I definitely don't mean "translate my
child to me" (which is not a friend thing particularly). I mean find
local Autistic adults with whom you have common interests and connect as
equal human adult people.

There are a whole lot of reasons this is the best thing you can do for your child:

First,
and possibly most importantly but mileage varies: your child is
noticing things. If you go through a mourning phase, or a difficult
adjustment phase, your child will notice and possibly blame himself.
Your child may not have the vocabulary for it, but at some point he will
figure out that he isn't the son you planned for and dreamed of, and he
might blame himself for that. We figure it out when we're a
disappointment, even if you do your best to hide that you're having a
hard time. Many Autistic children get in our heads, accurately or not,
that our parents only tolerate us because they're stuck with us.

Your
child needs to see you choosing to be around people whose minds work
like his. It's much harder to think your parents hate you and hate your
brain when they seek out the company of people who think like you.
Seeing the adults who are dearest to you--and like all children,
Autistic youth default to loving their parents--seeing them find someone
who reminds you of you? That's supremely important. Do not
underestimate the effect this can have, just knowing that your parents
would choose to be around you even if they weren't "stuck" with you.

Another
reason: many disabled children never meet an adult with their
disability. You might be surprised, and a bit saddened, at the
conclusions we come to. Some folks come to the vague idea that we'll
outgrow our disabilities (and when there's no sign of that, we're
reminded that we're disappointing, because you can bet we're getting
that message from someone in our lives). Or, I have friends who
concluded that their disabilities were fatal. That's a recipe for severe
anxiety, thinking that you're dying but you feel fine and no one has
felt the need to talk to you about your inevitable demise. We need
adults like us; this anxiety is completely unnecessary.

Your
child also needs role models. She may not be able to fill your shoes,
or Uncle Bob's or Auntie Bev's or her teacher's or those of any adult in
her immediate sphere. But my shoes may fit, or those of another adult
Autistic. All children need people in their lives who they can
realistically emulate, & Autistic children are no different. I was
pretty young when I knew the adult-woman things being modeled for me
were just not going to happen ever--and alternatives were never
presented. I was surrounded by folks who were similar to each other and
not much at all like me. This is stressful. Making your own make is
hard, and it's harder when everything you do is wrong (the premise of
somewhere between many and most autism therapies, and a message also
sent by peers, random strangers in the store, other adults, etc). Once
again, anxiety. It's easier to believe you aren't Doing It Wrong when
you know happy adults who took similar trails. Knowing options for the
future? Seeing unconventional but fulfilling adulthoods? So important.

If
you have culturally connected Autistic friends, your child also will
have a head start on a connection to the community. As he grows older,
he will have a life apart from your family. This is a good thing and an
essential part of growing up. The Autistic community is his birthright.
We as a general rule (can't speak for everyone) welcome friendly
parents, but your child is one of us. It's wonderful but also
overwhelming and scary to discover a place where you're "normal" when
you've never been, especially all alone. Even good overwhelm is
unpleasant when it gets too big. You can make this less of a shock by
having Autistic friends. "I'm not alone" doesn't have to be an adulthood
revelation; it can be a given. Your child deserves to grow up knowing
that he isn't alone, that there's a whole community that will
embrace him because he's one of ours. The gift of growing up with this
knowledge? I cannot imagine it having anything but good effects.

Also, we're awesome. Autistic people are loyal and hilarious, among other things. We're good friends.
We might provide insight to things about your kid that you never
thought of, completely on accident. Your way of looking at the world may
accidentally clarify things for us, too. But in my experience, Autistic
people are the funniest people on earth, and the most dedicated to
making sense and to fixing things that are not right (admittedly, my
sample might be skewed, but I also have a very large sample size).
That's how the people I hang out with roll. Making friends with us isn't
just good for your child. We're good for you, too, and you can be good
for us. A true friendship is a mutually beneficial relationship. We have
a lot to offer each other.

So breathe, put down the
pamphlets about all the different therapies, breathe again, and look in
your networks for some Autistic connection. It'll make your life, your
child's life, and some local Autistic's life, better.

Sunday, May 11, 2014

One of the most frequent and difficult parental concerns
that we see in the autism community is that of aggressive behavior on the part
of a child or teenager.Caring
parents are often frustrated at not being able to discern the source of their
child’s distress, or worry that while they can handle the physical outbursts of
a small child, they won’t know what to do when a child is older and larger.

Several of us at We Are Like Your Child have personal
experience with anger and aggression, or with children who do.

The following is a checklist of questions to address when
trying to identify the source of and alleviate aggression on the part of an
autistic child or adult.It does
not necessarily include every possibility, but is a preliminary checklist of,
in our experience, some major primary issues that are likely to be related to behavior
observed as aggression on the part of an autistic person.(To some extent, many of these issues
can be related to self-injury as well.)

These are presented in no rigid order of likelihood or
importance—they are all important factors to consider and investigate, and may affect different
individuals in different ways and different combinations.

1.Make
sure that they are not being abused or mistreated in any way—At home, at
school, in therapy or other activities…by parents, by teachers, by classmates,
by siblings (including what might seem like “normal” taunting)…physically,
sexually, emotionally or psychologically.

1a.If they are being subjected to therapy
intended to normalize their appearance, behavior, or mannerisms, to extinguish
stimming, or ensure compliance or indistinguishability, they are being abused.

1b.Do teachers at school engage in group
punishment for the misbehavior of individual students?If so, it can feel like there’s no
point to behaving well or not lashing out, since they’ll be punished anyway for
what they didn’t do.Extreme
anxiety can also result from feeling like you can’t ever know what the right
thing to do is, since punishment is seemingly random.

2.Do
they have a reliable and safe mode of communication?If not, what is being done to address
that?

2a.Is gaining speech being prioritized
over developing a mode of communication that works better for them?

3.Is
their communication, in whatever form it occurs, being acknowledged as such and
honored?Do people take
seriously what they say, in whatever way they are able to say it?Can they get their needs met by
non-aggressive means?

4.Is
their competence being presumed?Is their autonomy and right to self-direction being honored to the
greatest extent possible?Is their
right to bodily autonomy or personal space being violated?Are they being forced, pushed, tricked,
or coerced into activities or modes of social interaction that they are not
ready for?Are they being put into
situations where they feel unsupported or unsafe?Are they being allowed to do academic work at their level of
capability?Are their strengths being recognized and supported?Are they trusted to know and assert
their own limits?Are they being
included to the greatest extent possible in plans regarding their welfare, education,
and activities?

5.Is
something wrong in their sensory environment, whether at home or at
school?Is their home or classroom
environment too loud, chaotic, claustrophobic, or unpredictable?Are they trapped in an environment with
other kids they find overwhelming, hostile, or threatening?

5a.If they are intense sensory seekers in
any way (and remember that someone can be sensory-defensive in some regards,
and also sensory-seeking in others), do they have an outlet for intensive
physical input and focus, such as a martial art, sport, hiking, swimming, or
horseback riding?

6.Are
they allowed to say ‘no’ and have it mean something?This does not mean that they never have
to do something they don’t want to do (like go to the doctor or dentist), but
if the matter at hand is not a matter of life, health, or immediate safety, are
they allowed to refuse activities or situations that they find uncomfortable or
have no interest in?

If an unpleasant situation is truly unavoidable, is
everything possible being done to identify and address their discomfort?

7.Is
sadness, grief, or anxiety being expressed as anger or irritability?(This is VERY common in autistic
people.)Have they experienced a
loss of a family member, friend or favorite classmate, pet, or member of their
support staff recently?

8.Have
their plans, routines, or need for ritualization been disrupted?Has something changed recently in their
environment, family life, or social milieu?

9.Have
they had a full medical checkup and blood panels recently?Is it possible that they’re in pain or
discomfort from a treatable medical condition or food allergy/sensitivity that
they lack verbal means to communicate?(Even in verbal individuals, alexythymia, body awareness issues, effects
of compliance training, and atypical pain perception can make communication
about illness or pain difficult.) Nutritional,
dietary, and metabolic issues can also wreak havoc with our ability to
self-regulate.

10.Are
they being allowed sufficient down time and privacy?Or does their school and therapy
schedule mean that they’re working the equivalent of two full-time jobs?Is their ability to multi-task or
process being overwhelmed?We are
very vulnerable to sensory, information, and emotional overload.Do they have truly free time to spend
as they choose or be alone?Do
they have a space that is their own?

Finally,
something that we very strongly recommend, if you are looking for further
guidance or input, is to find an autistic adult or mentor local to you, who can
meet you and your child, observe their environment and interactions, and give
feedback on what kinds of changes or interventions might be helpful.

Monday, May 5, 2014

[image description: a pen-and-ink drawing of an animal that looks like the front half of two llamas, attached to one another at the waist. This is the "Pushmi Pullyu" creature from the Doctor Dolittle stories, an animal that gets nowhere because it wants to go in two directions at once.]

Like the famous creature from Doctor Dolittle stories, the Pushmi Pullyu, I am pulled in two different directions and, as a result, have a hard time getting anywhere at all. I have two strongly conflicting elements to my nature and only as I approach fifty years of age am I beginning to understand both elements enough to start finding a balance between them.

One half of me is an extravert. Yes, you heard that right. I am an Autistic extravert, the creature some would assure you doesn't exist. The official definition of an extravert is someone who gets their "juice" from being around people. I do love to spend time alone -- reading, writing, drawing, composing. Most extraverts are not "allergic" to spending time alone. But I deeply crave the company of people, their smiles, their thoughts, their play. I love group activities like dancing and drum circles. I love community events, especially colorful ones like Rainbow Gatherings and pagan festivals. I crave a large and diverse circle of friends. I want to be in the thick of things.

The other half of me is both sensory defensive and has C-PTSD. That half can't bear to be around people in numbers of more than 2 or 3 or for very long at a time. Bright lights, flashing lights, temperature highs and lows, strong smells, high-pitched noises, unexpected touch, rapid movement (think gaggles of children racing back and forth) are just unbearable for me. Crowds are a sensory nightmare. I simultaneously crave the press and chaos of a crowd and recoil in horror when I actually experience it. As a small child, I wanted to play with the other children but most often ended up hiding under the table from all their dashing about and squealing and stressful unpredictability.

On top of the sensory issues, years of brutal bullying and abuse have left me jumpy, suspicious, afraid of people, untrusting. I have a deep hunger to be part of a family, a circle of friends, a community, but when I find myself in the midst of people, I freak out, I snap, I react, I run away and hide. I just can't handle being around people and the sensory issues and C-PTSD build on each other in an ever-cycling feedback loop.

For years, these two halves of me were at war, just like the two halves of the Pushmi Pullyu battle over which direction to take. It didn't help that others would say things like, "toughen up," and "just give yourself time and you'll get used to it." I blamed myself for my dual nature and took it as a sign of weakness and inadequacy. If only I could just toughen up and stop being troubled by my senses! Or, conversely, if only I could drain away this childish need for others and be strong and adult enough to be truly happy alone!

But I wouldn't allow one half or the other to win and so I was living in a war zone. And every stress that came from forcing myself to endure emotional and sensory distress, waiting to "toughen up" and get used to it, added to the invisible wall between me and community. I began to live vicariously through movies and television shows. The Big Chill. Northern Exposure. Buffy the Vampire Slayer. I drank up those scenes of community, togetherness, chosen family. I hungered deeply for that sort of connection myself, but whenever I tried to find it, I would just end up a trembling ball of anxiety and tears.

Admitting that I am a Pushmi Pullyu was at least half the road to recovery for me. I am working on the emotional issues, but the sensory issues will not go away -- they are neurological and hard-wired into who I am. I will always be a person who needs quiet, gentle, short contact with only a few people at a time. My goal now is seeking balance -- finding a middle path between the crowds I wish for and the solitude my nervous system requires.

It's a delicate balancing act and one I'm still working on. I wish I had known and understood these dynamics when I was a child. As a child, I was a bit like the "painted bird" -- the bird who is painted a different color from the rest of the flock. The painted bird has a strong instinct to fly with the flock but the flock does not recognize it as one of their own, so they peck and peck at it, even unto death. The poor painted bird just keeps flying back for more because it needs the flock and it doesn't understand why everyone keeps pecking it. It dies confused and bloodied, still struggling to rejoin the others.

That was me as a child, striving again and again to be part of the community that was bullying and torturing me so harshly. No matter how hard they pecked me, I still kept trying to be one of them. The end result of years of this dynamic is Complex Post-Traumatic Stress Disorder: I have been "shell shocked" by bullying that sometimes became so violent that my life was at risk. And still, all I wanted was to belong.

There are many children out there like me. If you are parenting a painted bird child never say anything that could lead them to feel the blame for the abuse they are getting. I was told that I was bringing the abuse on myself and that belief was every bit as harmful to me -- a harm that still lingers with me today -- as the abuse itself. Protect your little painted bird. People will say "it's just good fun. All kids go through bullying. Yours just needs to toughen up a little." Say, "no! My beautiful, gentle child does not need to become tough and hard." and do everything you can to protect your child and find a safe place for them to grow and flourish.

And if your child also has sensory issues that are also causing them to be a Pushmi Pullyu -- eager to participate but melting down from sensory onslaught when they do, gently begin to explain to them, in ways they can understand at whatever age they may be, the idea of seeking balance. Help them to learn that they can't have everything or be everything but that they can find their own middle path that lets them get the most they can of as much as they can. Help them to learn to stand strong against those who would push with threats or guilt to try to force them to step out of balance with themselves. I have learned to say no when I need to protect myself and your child can learn it, too. (And hopefully your child will not require the nearly 50 years it has taken me to learn it!)

A Pushmi Pullyu is not an easy creature to be, but when the two front ends learn to co-operate, the Pushmi Pullyu can get twice as much accomplished. Being of two, conflicting natures has been stressful for me, but as I learn to find that place of balance -- a place that no one else can prescribe for me; I have to find it on my own and trust my own process -- I am coming to love the insights I gain from living with two halves pulling in opposite directions. I am coming to value who I am and where it has brought me in life.

Thursday, March 27, 2014

There was a graphic that went completely viral in both the
autism parent and theater communities of Facebook a while ago, which makes
occasional reappearances. It’s a
performance report note from the stage manager of a popular children’s
show. In one matinee performance,
there had been some chattering from the audience at one
point. Afterward, the stage
manager had learned from one of the teachers what the source of the commotion
had been: an autistic little boy,
who had, as far as anyone knew, never spoken before, had suddenly started
talking to the teacher sitting next to him all about what he was seeing. No one had even thought that he knew
his teacher’s name.

A couple of parents who commented were skeptical of the
account.While I resented the
incident being passed around as inspiration porn by many, it was entirely possible, I argued, that
under new and unique circumstances, a kid had displayed an ability for language
that he’d never demonstrated before.

I was indignantly lectured by one mother about how autism is
a neurobiological condition that can’t be cured by the magic of theater.

But being able to do something suddenly for the first time,
or under specific circumstances, or gain in speech abilities, isn’t recovery
from autism; it’s a really common experience, if not usually that dramatic.
Autistic people can possess extreme sensitivity to environmental detail,
patterning, and circumstance, and it can affect our abilities in any given
moment.Hadn’t they ever had
something similar happen?Was this
really not a thing that non-autistic people experienced?

They didn’t know what I was talking about.

*

We do gain skills
without necessarily being drilled or pushed, just in ways that might not be
apparent to observers.Just
because progress or learning aren’t being displayed to others does not mean
they aren’t happening.An ability
probably wasn’t learned or gained at the moment it was first displayed, but has
been “under construction,” internally, for a long time.Things that are intuitive and easy to
typical people can require long periods of interior fermentation and
distillation in order to develop, and then for us to feel safe or comfortable enough
to use them.

And then seemingly suddenly, when the time or circumstances
are right, there they are, like a night-blooming flower.

That uncertainty about whether they will ever show
themselves doesn’t make it a miracle when they do; it means it took the time or
circumstances it took for that to happen.

I’ve also said before that I feel that very few of my
autistic traits are, themselves, positive or negative.They’re all double-edged swords.Disabling or painful in one context,
necessary or pleasurable in a different context.

That an autistic person might suddenly display an ability
they’d never outwardly demonstrated before, or be able to do something under
extremely specific circumstances or specific kinds of stress that they can’t do
under typical, everyday circumstances, is neither magic nor miraculous.It’s a common aspect of being autistic,
and it’s one of my favorite parts.It’s part of how being autistic works
that distinct skills can develop at atypical times, and seemingly in isolation
from other aspects of development, or are usable in extremely specific contexts
when they aren’t normally.

Part of presuming competence is maintaining awareness that
just because a skill has never manifested itself yet, does not mean that it
never will.And that just because
someone might, in fact, never gain some particular skill, does not mean that
they won’t gain others.

*

Once, in the first summer I lived in my apartment, I planted
some pots of morning glories out on my fire escape, where they could trail up
the railings. I saw their long, spiraling
buds form, and anticipated their blooming.

Then something strange started happening.I would get home from work in the
afternoons, and the buds that had looked healthy and ready to burst that
morning would be withered and dead looking.I thought that somehow they were dying before they ever
bloomed.I couldn’t figure out
what could be happening to them.

On a rare day off, I went to take a book and cup of coffee
out to the fire escape to enjoy the mid-morning sun.

All the morning glories were in gorgeous, bright pink
bloom.I realized they must only
open their buds at a certain angle or intensity of sunlight.Once they did, the flowers only lasted
for few hours before wilting.Nothing
was wrong with the plants.That
was just what they did.They
weren’t the same as marigolds or tulips.

-Moonflowers bloom only at night.

-Four o’clocks bloom only in shade or late afternoon; you can trick them with
an umbrella.

-Nasturtiums flower only in arid conditions; they never will if they get too
much water.

-Giant corpse blossoms can bloom only once every several years, or even several
decades.That doesn’t mean they
don’t, just because someone could watch one for years and never see it happen.

-The seeds of some native prairie plants can germinate only after
exposure to the intense heat of a wildfire.

As a kid, I didn’t pick up bike riding at the same age as
everyone else I knew.It just
didn’t work for me the way it apparently did for everyone else, and I couldn’t
stay upright without training wheels for much longer than was socially
acceptable.Discouraged and embarrassed,
I gave up and threw my bike into a corner of the garage.Months or years went by, and I didn’t
look at it or touch it or attempt to practice.I couldn’t ride a bike.That was it.

Then one day when I was 8 or 9, I just felt like I probably
could.I dug my bike out of the
garage and on the very first try, started riding in perfect circles around the
driveway.

For a long time, I couldn’t summon the coordination
necessary to blow my nose.Then
one day I just could.I was
17.(I was driving before
that.I could drive before I could
blow my nose.)

One day I just understood how to make my bed.I was 31.

Gain in abilities, even when sudden and seemingly
inexplicable, is not recovery from autism; the fact that we learn very
differently from other people is intrinsic to autism, and one of those
differences seems to be, very commonly, that immense periods of internal
processing, combined with specific circumstances, can be necessary before a
skill can be externalized.

There’s nothing wrong with that, nor is there anything
particularly miraculous about it.

Wednesday, March 5, 2014

Yeah, I know, even the neurotypical folk don't like doing this. I'm fairly sure that hours spent staring at a blank word document because I don't even know how to start, followed by staring at the scaffold someone gave me having no clue how to build on it, then finally getting somewhere when a friend who gets my cognitive issues asked me questions one by one to help me build on it and then walking me through editing is more than most people need.

Qualitative differences, they are a thing. Also, "I have a cognitive issue that means I can't actually do this independently" is different from "I really don't like doing this."

But with help, I got it done-ish (yay!) and my friend was cool with my putting the results of the help here, so here it is.

First off, here's the scaffold that's pretty much what he gave me.

my name is flap
you do research
it's actually a lot like the research I wrote my final paper on.
I want do research.
I have done research before in US.
Hire me.

Then he asked me a pile of questions that he knew could get me to elaborate. It's still not really a letter, but there's content now!

my name is Alyssa.

you do research and development of dye-sensitized solar cells.

it's actually a lot like the research I wrote my final paper on: quantum-dot sensitized solar cells. It uses similar properties, just using a different tiny particle.I talked about improving the efficiency of quantum dot sensitized solar cells.A lot of the research in the quantum dot ones uses the research on dye ones as a starting point!but not everything is the same. dye likes high temp, not so much quantum dots.

I want do research. SCIENCE! I want to do nanotechnology research long-term, and this is pretty much doing nanotechnology research now.
I've been interested in nanotechnology since I was ten or so, reading Science News. Took longer to figure out that I can do nanotechnology research myself, but yay cool thing!
Making solar cells better is specifically important because saving the environment is important.
Combining "important research" and "this is just REALLY COOL" makes a good combination as far as things I want to do go.

I have done research before in US. I worked on making gold-coated liposomes. I worked under [professor] in mechanical engineering @ [school] and [another professor] in chemical engineering @ [school].

I applied for and got a small grant from the universities undergraduate research initiative.Another undergrad is currently working on the project while I'm away.
We took pictures using an electron microscope and we do seem to have shells.
Um... the shells are applicable to a bunch of things potentially, including targetted cancer treatment.

I've done research before and was good at it, see above.
I can read a lot and there's a lot of reading involved in doing science. I am good at numbers and computers and following written directions, and I have experience in writing the directions for experiments as well

Science is a thing I'm generally good at.
Complementary language abilities is a thing, but [current program] might get pissy at me for pointing it out. (Both of us can read the relevant stuff in English or in Chinese, but English is my native language and Chinese is his, so that's potentially useful? Hire me.

Finally, he helped me connect and edit stuff. This is the step where I came closest to doing it myself, but I did need some help.

Dear Professor Wang,
I am writing to ask about doing research in your lab this semester regarding your work in dye-sensitized solar cells. It's in a similar area to my final paper topic from your class, improved efficiency for quantum-dot sensitized solar cells, and much of the reasearch I looked at mentioned relationships between the two. I'm interested in research within nanotechnology, and have done research before at [school] under [professor] (Mechanical Engineering) and [other professor] (Chemical Engineering.) There, I worked on growing a gold nanolayer onto liposomes and successfully applied for the undergraduate research initiative grant. The early results have been promising and I have been asked to return to their lab upon my return to [location of school]. As an experienced research assistant, I think I could be helpful in your work on nanocrystals and their applications. The fact that I am bilingual in English and Chinese may prove useful in that I can read research in either language. I hope to hear back from you soon about this research opportunity and am happy to provide references upon request.
Best,
Alyssa [last name]

The last step was to translate it into Chinese... that never actually happened... but my program made the contacts and found me another person to do research under, who I'm meeting with tomorrow compared to my writing this and about a week ago compared to when this posts.

Saturday, March 1, 2014

Reprint from Yes, That Too, closely related to the previous post here.

This is a thing I was thinking about, after my fun times with my teachers saying I don't use formal enough language when I write and speak in Chinese class. I'm actually way more formal in my writing and oral reports for Chinese than I ever was in classes conducted in English, since our classes have basically been “here have more formal words and here's how to use them” for the last few years. That said, I'm still nowhere near as formal in my speech as my classmates. I've been studying the language for sometimes twice as long, and I'm definitely more fluid with the words I'm comfortable with, but formality? Ha. That's basically not a thing.

And here's what I realized:

People still think I'm a good tutor and a good teacher. They do. In fact, what they usually say is that my explanation was the first one that made sense to them. Now, what's different about the way I explain stuff? Oh, wait. It's that lack of formal language again, isn't it? Yes, that's right, the same thing I'm getting in trouble with in my Chinese classes, the same thing that's gotten my essays marked down since at least the seventh grade? It's what makes me a good teacher.

Now why are we trying to change the weird language usage that makes me a better teacher? What is the advantage of changing it?

I've heard several things from teachers who are trying to change it.

“No one will take you seriously if you write like that.”

“It's not formal enough.”

“You need to learn to code-switch.”“The words you're using are too simple.”

“Your sentences are too simple.”

“What will you do when you're writing about complicated things?”

Here's the thing. I have written about complicated things. I've used the technical terms when they make more sense, and I've used simple words when they are better words, and it works. Isn't the sign of a good teacher that they can take a complicated thing and make it simpler? Make it make sense? It seems to me that using simpler words to the extent that we can is a better idea, if the goal is to make people understand instead of being to show off how much you know.

My sentences aren't always simple. Sometimes they are. I don't understand why complicated is an end in it's own right, so “too simple” is something I'm just going to keep throwing out.

I do have some ability to code-switch. It's not much of a much, but it exists. I need a reason to use this ability, though. I'm not going to tire myself out code-switching for no good reason.

Formality is a social expectation. It really is. As such, if it has negligible effect (or maybe even helps) with functionality, fine, I'll go with it. When it actively impedes function, that's not cool. In this case, demanding formality does, in fact, actively impede function. It does this in multiple ways.

One is that it makes it harder for me to communicate the meaning I want to communicate. Sometimes that's because the more formal word doesn't have the same shade of meaning the less formal one does. Sometimes that's because I just can't think of the more formal one. Sometimes it's because nitpicking my vocabulary slows down my ability to come up with sentences to the point that my brain is way ahead of my speaking or writing and then I lose track of what I'm thinking. This leads to The Sads.

The other time formality causes a problem is when I'm teaching. A good teacher explains things in ways that their students will understand. That's not the same thing as explaining in the most formal way possible. In fact, my experience as a tutor and teacher tells me that those things are often opposites. The simplest, most conversational explanation is the one that my students tend to understand. At that point, yes, formality is impeding function. That means formality needs to go away.

Finally, the first reason. “No one will take you seriously if you write like that.” Is this my problem? I'd argue that it's other people having a problem with the packaging of an idea and therefore ignoring the idea itself. I'd also argue that it's a load of nonsense. If it were true, I wouldn't have readers who take my writing seriously. I certainly wouldn't have had a blog post of mine cited in an academic journal. I wouldn't be presenting at conferences and workshops. I wouldn't be getting pieces accepted in books. I am getting taken seriously while writing like this. I'm getting taken seriously by people who realize that not everyone is going to write the exact same way, and that that's fine. I'm getting taken seriously by people who care more about ideas being communicated than they do about how smart I can make myself sound while in the writing.

I really don't care how smart I can make myself sound in the writing. It's not the point. I care how well I can get the idea across. If my natural mode of speech and writing is one that works well for teaching beginners (I'm going to take beginners words for it over that of “experts” who might say it doesn't work,) I'm hanging on to that. I don't want to be the person who learns the fancy codes and finds that they've lost their personal voice. I don't want to be the person who needs to be re-taught to use words people know.

If the way my brain tends to bounce off jargon-heavy and meaning-light writing makes it harder for me to write that way and then I keep writing to explain, I'm honestly OK with that. (I'm fine with technical terms, but when they are strung together in ways that don't mean much or when the terms themselves are too broad, my mind starts bouncing. Academic papers tend to be bad, even when I understand the concepts. Being written by someone whose first language isn't English is generally OK- some of their issues are similar to my own, even. Not always picking the word that best suits the situation, even if the meaning is right? They'll do that, and I'll do that.)